Is it worth treating?

[chrisnsteph1022]

I know that's a question only I can answer for myself, but I'm looking for some input. I'm currently on Apriso (2 years now-flared up bad while on it) and Cimzia (added in February). Prior to this last flare, I had a great remission. Zero symptoms. One normal BM every day. Ate whatever I wanted. For 6 years. I'm looking for that again, but wondering if it's possible.

My first flare was minor and only in the TI. This last flare was severe, in TI and all through colon. Since January, I've gone from bloody diarrhea 15x/day to non-bloody diarrhea 3-4x/day. From debilitating pain to just cramping pain off and on. From constant nausea to occasional nausea. In comparison, I'm doing MUCH better.

However, I'm not in remission. So that leads me to my question. Should I try to do anything about it or just be happy I'm doing better and live with what's left? I felt better a couple months ago, but have very slowly declined to where I am now. I'm worried the Cimzia is starting to fail. At what point do I call it quits and try another med? And what's left? If Cimzia didn't work, will Humira or Remicade?

 

[Jessica]

Well, I don't know a lot about biologics... so, I can't really help there. But the whole giving up hope on your meds thing. I got that down to a "t".

About the beginning of June this year was the first time (in 3 years since my diagnosis) I had no steroids in my pill box to take! I was ecstatic... everyone I knew, knew it too. I made sure of it.

However, just two months prior I was having a TB test and scheduling a second opinion to move up to the big dogs. I kept putting it off for a year or so prior, but I had given up on my meds. They weren't doing their job, and I was feeling worse.

I know that everyone's story is different. But I hope I sent the right message. And everyone's going to suggest something different. I have 3-4 non-bloody diarrhea on an average day. To me, that's not so bad. But only you can decide what you are okay with. You know that you're doing better, but still not in remission. IMO, I think you're okay until you KNOW that the meds aren't working and you need something else.

<3 I hope you get better. Do keep us updated on your decision. I'm know a lot of people feel this way.

 

[chrisnsteph1022]

Thanks. I wanted to add that taking a short course of steroids is out of the question. I will not ever take prednisone again, for multiple reasons, unless they tell me I'm on my death bed and that is the only thing that will save my life. I haven't been in this position, but I would probably choose surgery before prednisone.

 

[Rebecca29]

I have been on Pentasa since February of this year. I seemed to be doing better, had stress problems in my relationship, stopped taking Pentasa, been back on since June and I am going 6-8 times a day again! I had an episode in March that put me in the hospital which the Doc said it could have been just some bad food that I ate. Anyway, the hospital doctor put me on Prednisone right away just knowing I had CD and was throwing up with diarrhea. I don't ever want to touch Prednisone again! I am really getting tired of going to the bathroom. I read of every one with bloody stool and abdominal pains. I have nothing of that sort. Just running to the bathroom more than I like. I feel as if I am missing out on so much because I am running to the bathroom all the time. My husband took me to dinner 30 minutes away and I couldnt even make it 10 minutes out the restaurant door and I am stopping at the next one to use the bathroom. Thank god my husband is so supportive and understanding, but I felt horrible/embarrassed and depressed. I don't know what to do.

 

[scottmyster]

HI stephanie, i would defiently go to the doctor and tell him you symptoms and see what he do for you. Especially if you think the drugs your taking now are doing nothing for you and especially if your in constant pain and diarrhea.

scott

 

[lookame]

have that same feeling right now. For about 4ish months I was (and still am) on 50 mgs of 6mp and was dong fine my GI even said I was in remission...and about a month after he said that here I am passing blood and mucous. I'm not sure if it's worth calling my GI and essentially whining over it since I'm not as bad as I was the year before but at the same time I could(and have) been better. Should I suck it up and assume this is ok for me...yeah there is blood but it's at the end of my stools(and sometimes it's just striaght blood) and mucous is pretty wound throughout the stools and the stools are thinner than normal but they are also formed and I don;t have a whole lot of pain(when before I felt like I was crapping my entire intestinal tract out...you know the feeling like someone is running a giant knife down the length of your colon digging it into some areas and tearing up the colon period) so is this my normal or do I hope for a full remission?